Re: visit to neuro today, terri g.

January 2, 2009

,

Maybe I didn't make myself to clear. The rheumy that was treating me

with cytoxan had his license suspended.

My weakness, pain, fatigue and all my other symptoms improved by about

80%. I don't think that any treatment will ever get me back to 100% but

I would take the 80 anytime. Cytoxan is a lot more powerful but I only

had an infusion once a month. I felt really bad for about 2 or 3 days

with chills, pain, nausea, etc. With each infusion, I received

medication to protect my bladder, anti-nausea medication and a steriod.

My doctor also gave me three types of anti-nausea meds to counteract the

cytoxan side-effects.

I have to tell you, I could not wait until I had an infusion. The place

where I had them done was always backed up so I was there 8-10 hours but

I took books, magazine, healthy snacks, etc. I also drank as much as I

can stand during the treatments. It was worth it for me and I wish I

was back on it now. I actually thught I would be able to go back to

work!

Well, let me know what happens.

Terri G.

> >

> > well I had my appt with the neuro today and due to the spinal tap i

> had done while in the hospital,, there was three markers that he said

> shows that he needs to be more aggressive with treatment.. he said

there

> is more powerful chemo drugs he could put me on,, but right now he

said

> he wants to just increase the Imuran and push the dose on that before

> putting me on stronger meds.. So today I have to start on 150 mg

3times

> a day for 4 months and if this does not help, than on my next visit he

> will put me on something like cytoxin or ect..

> > So that was my visit.. now i will be going through the sickness

again

> he said for sure.. i dont' look forward to that... ps is there anyone

> who had went through this were they had to be on large doses of Imuran

> and didn't work and had to go the cytoxin route?

> > many blessings and hugs and a pain free day

> >

>

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